*I am not sponsored by any of the brands of the products mentioned in this article.

Leaving the house can feel intimidating at first because it can be nerve-racking to know whether or not you might have an emergency or flare up when you’re outside.

While you won’t be able to prevent your body from having a flare or symptoms acting out, I wanted to provide some advice to the things you can control when you leave your house to help make you more comfortable if any flares or emergencies were to arise.

The first thing I do is recognize that if I need help and I’m in public, depending on what’s happening I may be able to either handle the situation myself or I might need to ask someone else to help me.

Therefore, I will show what things I carry with me to be able to either manage my illness on my own or in the case of needing someone else to help me.

Also keep in mind that I’m at a stage where I am able to take care of myself and therefore these methods are adjusted specifically for this (and handling navigating issues with the help of strangers potentially).

*At this time, I am not needing a wheelchair and therefore will not be including any wheelchair bag packing tips.

THE BACKPACK

I carry with me all of these items within my TPN backpack which remains on me all of the time since I have 24-hour infusions. I finally found a bag I fell in love with and have used for a year from MightyWell. It even has a section behind where you store your TPN to be able to carry school supplies and other regular items.

I just had to alter the inside of the bag slightly to be able to fit my 2100mL TPN bag nicely. I simply seam ripped the center plastic separator and sewed on some Velcro straps to hold up my TPN bag, so it doesn’t get a line occlusion.

Some things I particularly love about it (not sponsored):

• It’s waterproof: super great for going out on rainy days because I don’t have to worry about my TPN getting wet.

• It’s super easy to clean: I just use Clorox wipes to wipe the outside and inside of the bag even down to the straps! The material is nylon, so it is super easy to clean.

• It had adjustable straps: As a person with a short torso, I love that I can adjust the straps to fit my height better.

• It’s not massive: once again, as a short person (5’0”) most average backpacks (especially when they’re heavy) hit the backs of my knees and make me fall backwards because of the weight. This backpack is 14 inches tall so it’s a perfect fit for me and isn’t massive like the original TPN bag that came with my TPN (which was a massive rectangle).

• No worries with internal leaks: the inside has a barrier between the TPN section and the school section of the bag which prevents spills from leaking into either side.

• The clear zip compartments are needle proof: Always good to have in case you happen to bring your glucometer or anything that you may need to dispose of needles while on the go.

• You choose where your TPN line comes out: There are zips on either side of the bag so you can choose which side your TPN comes out of. I loved this because I had already adapted to my TPN line coming out of the right side of the bag so I liked that I could have it the same way.

• Strong Top Loop: The loop at the top of the bag is super strong which is great because at night I still use my IV pole to hang the backpack off of it. My bag weighs around 15 pounds because of the volume of my TPN (and I change in the evening so it’s a fresh bag at the time it gets hung) and it has no issues and holds strong.

TPN SUPPLIES

Spare flushes, caps, and alcohol wipes

I take spare supplies in order to be able to stop my line an disconnect in public in case there’s an issue with it for some reason.

• I carry with me 2 saline flushes and 2 heparin flushes to be able to stop both of my lines.

• I carry even more alcohol wipes in case I happen to drop one or need extra.

• I carry multiple green caps for the lumens and blue caps for the TPN line itself (in case I end up disconnecting it in an emergency).

Spare dressings, sterile gloves, and hand sanitizer

I bring spare dressing supplies (basic) in case I need to re-dress or cover my dressing in an emergency.

• I carry 1-2 IV3000 dressings (since they’re hard to put on and I might mess up the first time or need a second).

• I have sterile gloves that were in first aid kits I had around the house that are in sterile plastic bags in case the site is open, and I need to apply the dressing.

• I have a couple hand sanitizer small flip and squeeze packets that come with the dressing kits normally. I have these in case I need to sterilize my hands before putting on gloves or doing something else with my line.

Spare batteries

• I carry 2 spare batteries for my pump in case they happen to die or have some issue where I need to replace them (for my old CADD Solis Pump I needed to carry 4 so it depends on your pump’s battery needs).

TPN Bag Labels

I have 2 labels I keep on my bag to help both either the public in an emergency or the ER doctors if I happen to be there in an emergency.

• My iron-on label: I had a custom-made iron on label from Etsy that states, “Parenteral Feeding Equipment Do Not Separate”.

• This is because I’ve gone to the ER many times with the backpack and doctors have tried to pull it away from me not realizing that it was connected to me internally.

• My medical bag tag: I ordered this also off of Etsy and it’s extremely helpful for both the public and ER doctors in the case of an emergency.

• It’s also really helpful in airports to have that bag tag as well.

TUBIE CLIPS

Tubie Clips are the nickname given to tube clips that are used to help keep your excess TPN line coiled and out of the way.

I use these every time I go out so it minimizes the chances that someone walking past me might accidentally get the line stuck on something (or I get accidentally stuck on something) and has it so it won’t be pulling out your line. Tubie clips clip onto your clothing without leaving a clip mark and have a strong grip so they don’t fall off. They also have 1-2 button snaps (depending on who you order from) and that can be snapped in to secure your coiled line.

There are tons of Etsy stores that sell these because they’re handmade by other tubie users. My personal favorite brand is made by someone who has really beautiful design patterns that match more of my age and clothing style. Her brand is called Threads of Kindness and I’ve included two images below from her store.

EMERGENCY MEDICATIONS

I keep all of my medications inside of a medication bag I got off of Amazon, so they are easy to find inside of my bag. I added on a pin that says “medications” to help in case a stranger is assisting me in an emergency-they can easily find the bag.

I also keep the actual prescription bottles inside of the bag so if any doctors or ER personnel need to know what the prescription is used for or who prescribed it-it’s all on the bottle (and so they know it has been prescribed to me).

I also keep a card inside of the bag that I made which has color coded dots that match a color-coded dot on the medication bottle. Next to the colored dot on the card, I have the symptom issue. I have this in case I am in an emergency where I cannot administer my own medication and need a stranger to get the medication for me. This way they can match the symptom issue on the card and find the matching prescription bottle.

I always carry in my medical bag:

• Cyclobenzaprine: In case I have a tremor attack or esophagus spasm.

• Oxycodone: For severe abdominal pain attacks (or other severe pain attacks).

• Glucose tabs: For low blood sugar that I need to fix quickly.

• Lollipop/smarties: For low blood sugar that I don’t need to fix instantly (and if I’m in a place I feel comfortable removing my mask to briefly eat).

• Seabands: For generalized motion sickness and vertigo issues.

• Meclizine: For vertigo attacks that need instant fixing.

• Ondansetron: For nausea.

MINI WATER BOTTLE

I have a 12 ounce water bottle with a straw from Simple Modern that I got off of Amazon. It is leak proof and metal, so it keeps my water cool.

• I have a small backpack, so I like having a small water bottle to carry with me. I also don’t drink much and it’s pretty much there in case I need water to swallow my pills.

• I don’t typically fill it up more than halfway and it works really well.

*If I am at home I typically do not carry my water bottle in my backpack.

WALLET & IMPORTANT CARDS

Within my wallet I am always sure to have these cards inside as I’ve found from paramedics that they’ve been really helpful for them to easily find:

• Medical insurance card: Always great to have on you and especially helpful in emergencies.

• ID: I have a long last name so it’s easy for a paramedic to get my ID and see all of the information they may need if I’m in a emergency scenario where I can’t talk.

• Hospital cards of my doctors: This is helpful if paramedics or someone who is assisting me needs to contact someone on my care team-they have their info and phone number on the card.

• Hickman Card: After my surgery I was given a Hickman card that notates who performed my surgery, what type of line it is, where the implant site was, the product code info and who to call for more reference information.

• Sunflower ID: The sunflower lanyard and ID card are known as hidden disability identification cards from Hidden Disabilities. They are helpful and easily recognizable in case of an emergency. You can personalize your card to your specific illness and/or disability and are helpful when you’re out in public. You can also add an emergency contact which is really helpful again, if you need a stranger’s assistance.

iPHONE FEATURES

The iPhone has a feature in its contact card section that you can add a medical ID for yourself and adjust it to when you call 911, it sends them the information from the medical ID.

I have mine set up to mention who my health care proxy is, my conditions and medications, the main hospital I use, and my allergies. I also have it set up to send a message to my emergency contact with my current location when I call 911 so they know that I’m dialing for help and where I am currently.

This is completely optional but it’s a really great tool to use when you’re out especially if you’re living alone!!

OTHER SUPPORT ITEMS

I also have on my bag a couple “support items” that I like to look at or hold if I’m in a scenario where I’m feeling uncomfortable and need a helpful supportive reminder. These aren’t used in emergencies but rather moments that I might need “support” as a person who lives independently.

• “Fear” Pin: I have a pin on the front of my backpack that I got from The Tired Society which says, “Feel the fear and do it anyway” which I always look to before procedures.

• “Smiley” Keychain: On the side of my bag next to my medical tag I have a smiley face keychain from A Dose of Reminders which says, “You’re Doing Better Than You Think”. As a person who is a perfectionist and judges themselves for not “doing better” or recognizing all that I’ve already come through- it’s a helpful reminder.

• Spoonie Keychain: For Christmas last year my brother gifted me a keychain (linked here) that says, “Fate whispers to the warrior ‘you cannot withstand the storm’ and the warrior whisper back I am the storm”. I keep this keychain inside the front of my bag and tend to grab it before an appointment or procedure that I’m nervous about. It’s another helpful reminder that I can do anything, and it reminds me that my brother is supporting me.

These are the things that I carry in my backpack all the time that I find really helpful to have in emergency situations. I came up with this list after having tons of situations I encountered on my own and realized things I needed to change to help me feel more comfortable.

You may find things that work and others that don’t and ultimately with time, you will find what works best for you.

As always, if you have any questions, feel free to reach out to me using the question form below the article.